Deaf-blind freedom -- How far?

This is an interesting discussion (or debate as some called it) from the deaf-blind list (DBL) between the deaf-blind community and SSPs. It talks about the moral and ethical questions facing them as SSPs go about their duty (or duties in some cases) as hearing/sight guide for the Deaf-Blind people. Please read on as the chances of you being in that position will happen. I admitted that I went a little overboard using my example as a point but it does have a very strong point, defining the boundary between individuals who are deaf-blind and SSPs.

Kerry writes:
Two expressions I knew and accepted without challenge were "Lone Wolf" and "Lucky Dog". I sensed "Lone Wolf" was uttered with admiration while "Lucky Dog" was said with sarcasm. I liked being called "Lone Wolf" without really knowing why. I felt sorry for people who got labeled "Lucky Dog". Then the following story was given to me. Please read it, then I will continue on my own.

The Dog's Life

One day in midsummer, as the sun began to set, the heat of the day waned a little and all the forest animals crept out of shady hiding places.

They moved to the stream where they met every night to drink.

The summer's heat was hard on the animals, but most exhausted was Wolf, who suffered from hunger and thirst. He had grown thin and his coat was ragged.

Walking along, he soon passed by the farmer's house and spotted Dog lolling in the long grass. "Where are you headed on this fine evening?" Dog asked.

"I'm heading toward the stream to drink," Wolf replied. "If you like, you may join me."

Dog was delighted. He checked to make sure his master was nowhere nearby, and then ran to Wolf's side and walked along with him to the stream.

"That's no problem at all," Dog said. "I am fed day and night. I eat the most wonderful foods you might imagine. And I sleep in comfort in a lovely home. Why, there's no secret at all to my marvelous coat and full stomach. I live a life of luxury."

"What must you do in return for all your luxuries?" Wolf asked.

"I guard the house," Dog replied, looking again over his shoulder. He would have to hurry once nightfall came, for his master counted on him to watch the place at night.

"That sounds easy enough," Wolf said. "I envy you, for at present I live in the woods and must endure the heat of day and the mosquitoes. They crawl upon my skin sometimes and I rarely have enough to eat. You see, I share the forest food with all the other creatures. Sometimes I wonder what it would be like to be like you."

"But you can!" Dog answered. "Come home with me and I will tell my master that you've come to help us guard the house."

Wolf grinned and the two trotted quickly to Dog's house.

As they were walking, Wolf spotted something on Dog's neck. He saw that it was made of leather, bound tightly and carrying silver rings with chains.

"What is that thing around your neck?" Wolf asked.

"That's nothing," said Dog.

"Please, Dog. It is something. Tell me what it is."

"If you must know," said Dog, "this is a collar. My master ties me up during the daytime, but that is only because my master wants me to sleep during the day so that I might be full of vigor at night. Once the sun sets, I'm set free, as you see. And then my master brings me bones from his own table and the children feed me scraps. Just imagine, Wolf. Soon you, too, will have all the table scraps you want and you'll be loved by all the children, and everything will be wonderful. You'll have a roof over your head. . ."

But Wolf raised a paw to silence Dog. He had heard enough. "I'm sorry, Dog," he said, "but you may keep your happiness. I would not trade my freedom for all the treats in the world. I wish you well, but I must say good night."

And with that Wolf turned around and set off on his own. Dog shook his head for he did not understand freedom.

OK, here I am again. The Wolf Patrol in the Boy Scouts seemed to go on daring adventures. The Wolves seemed to have more responsibilities. Entrance into the Wolf Pack was tough. Brains and Brawn went together. I spent much of my time alone. Self-reliance and a knack for survival were second nature. I made it in. Today, I see a lot of disabled people like Dog. Many service providers appear like Dog's master. This is why I like to advocate for more Wolves. Here's a little humor to lighten the mood.

BITING WORDS

Our very large German Shepherd was an excellent watchdog, devoted to our four teenagers, but suspicious of strangers. One afternoon, I had to leave the house just before the kids got home from school. I tied the dog up in the backyard, locked the house and had no qualms about leaving a note on the front door telling the children where to find the house key: tied to the dog's collar.

(Contributed by Nancy Maters. [RD DEC 92].}

Now you understand me a little better. Which are you: a Wolf or a Dog?

Janie writes:

Thank you for making me think a bit. Consider me a part of the wolf pack, too!

Sometimes I worry about people getting tired of me being too outspoken on behalf of DB Community, but then I think back. . . no way! so I push myself again and again to advocate for DBP.

Now I wonder about the SSPs/intervenors' roles in this story. I have met some SSPs who really care about us, not struggling for power over us; others I have met made me uncomfortable and angry when they tried to control us. I am aware that some of them might not be aware of doing this to us; some, however, are aware and they try to make themselves feel better by controlling us.

Hey, you SSPs/intervenors, I am not being negative about you. I am just blunt as usual. You are important to us. Still, we need to clarify some issues re: our rights, our needs, our freedom of choices, etc.

Randy writes:

Hi Everyone,

Here is your friendly hippie Randy Pope pondering with this subject in Jamie and Kerry's recent article. I admitted there is some truth in it. However I have a story from a different point of view and some of you may not like it. The story beings like this.

As the deaf-blind convention got underway there was free time one night that all the deaf-blind individuals could go anywhere in town on their own with an SSP. Two deaf-blind men with limited vision wanted to go to a bar where there were topless ladies dancing on the floor. Their SSPs flatly refused to go because they felt like it was wrong for religious and political reasons. The SSP coordinator could not help since there was no other SSP available that would be willing to take them. So the two individuals had to settle for another place that was acceptable to the SSPs.

The question is, "Do the SSPs have the right to determine what is morally right and wrong for the deaf-blind population and limit their choices??" In this situation, no I think not.

Granted, the topless bar is an insult to the ladies and it is, for some of you, morally wrong to display the lady's body as a sex toy. I am on the same line with this. Now we have two deaf-blind individuals who are making choices for themselves. I feel no matter what are my convictions, they should have a right to go where they want to be. Including places that are against my belief. The SSP should not decide or in some cases control the decision make of the person who is deaf-blind. It is his/her choice and he/she should be responsible for the choices they make. This holds true for anyone as far as that goes. Now I am not talking about robbing a bank or killing someone. This is where common sense gets used.

This has happened to me, not in a topless bar, but in a bar where liquor was served. The SSP coordinator could not find an SSP that would do it. So I volunteered to take him instead. I can speak well but have lousy vision. Anyway, I had help from the hearing people guiding me in the bar and made sure that the individual that I came with was happy, and I felt I did my job. Well, my church got wind of my activity. At the same time they urged the church and community to vote against liquor by referendum. Emotions ran so high during the community vote against liquor that I got lectured to death on the sins of drinking and how it ruins the family. On top of that, they accused me of wimping out and that I should have taken a stand not to go into a bar. I explained that I am not in favor of drinking and would prefer to stay neutral on the issue because not many people will honor a dry law anyway. If you cannot stop the drug trade, what makes you think that you can control the drinking habits of the community? So what is my point? The point is I will not control the deaf-blind wishes or decisions no matter how or what I feel, even if it means taking the deaf-blind men to a topless bar. In my opinion it is morally wrong but I have no right to impose my belief on that individual.

There are some issues in regards to honoring the SSP's rights too. As a deaf-blind hippie like me, I try to work it out with the SSP in some way while still in control of my decision. I really don't want the SSP to feel miserable during the whole time when I am having fun. I would work with the other deaf-blind people, like trading SSPs for one that will agree to my kind of fun. I am sure there are other ways that can be worked out, too. I guess what I am saying is that there is a happy medium in most cases, if not all.

These are my opinions and hopefully we will hear from others on this list, supporting or opposing views. You all keep cool and see you all around.

Kerry writes:

Randy: Everything you said was very clear. The only little bump in the road was your last words about agreeing and opposing. I would rather anyone talk and look at both sides. It lends a lot more information and understanding that way.

I have had the very same discussion with certain intervenors. I am amazed at how many will not even discuss the issues. I am very comfortable with talking about this and it reminds me of my attempts to "define the role" of intervenors/SSPs. Same thing.

I have no conclusions except to hope for open-minded assistance with them telling me honestly what they do NOT want to do.

Janie writes:

Randy, I appreciate your candor; your experience was common and unfortunately, it will happen again and again with other DBP [Deaf Blind People]. You have raised a good point: how far?

Several questions pop up in my mind:

When we compromise, is it at our expense or at the SSP's expense?

What do we do in general about some people with a "savior" complex towards disabled people? (I have heard that some believe that we are being punished by God thus our DBness or any other disability... groan!)

Are we DBP expecting too much from our SSPs?

Why is there no "national" standard (guidelines) to define SSP's responsibilities and DBP's responsibilities? (i.e. RID has a code of ethics, types of interpreters, levels of skills, etc.)

I remember AADB had an SSP committee who developed constitution and by-laws and Guidelines. Dunno what happened to this committee(?) (As one of the AADB board members, I will check into it.) Just a few thoughts.

Janet writes:

Here is my view.

A deaf blind person should have the right to choose whatever activity they want to do. They should not be held down because of someone else's judgments or beliefs. If those guys wanted to go to the topless bar, they had a right to go (I personally do not support women being seen as sex objects) just as any other guy would be able to go. An SSP does not have the right to impose their moral, political, religious beliefs upon the deafblind person. This is wrong. However, an SSP has the right to decline a particular job such as going to the topless bar, and leave it at that, period, without further comments.

Randy, I think you were super to help that deaf blind person to go and enjoy themselves at the bar. You could go and not partake in liquor and at the same time the deaf blind person was able to enjoy themselves. That was very honorable of you.

A deaf blind person should not be curtailed from activities they want to do just because someone else's belief system does not jibe with it. This only keeps the deaf blind person in a position of being helpless: the very position we are trying to get out of.

Bob writes:

As a sometime interpreter and sometime SSP, I think the best to hope for is to agree to disagree. I can think of several important reasons why I would not wish to be in the position of an SSP in a topless bar - exploiting women, dangerous area and people there, and maintaining my free will. I give my time and am motivated to be with deaf-blind people who give back. Interpreting seems easier. Often I get paid and the rules of conduct are understood. The SSP role is often very unclear until both deaf-blind persons and the support person talk a lot about expectations.

If there are other choices for the free night that both the SSP and the deaf-blind men can agree on, that seems reasonable. Agree to disagree on one choice and make another. There will be other times to go to the bar if there is more planning. Other SSPs may have different opinions. Forcing such strong opinions without more choice for the SSP role seems dangerous to me. I think it is as much about the moral situation of the SSP as it is of the deaf-blind person. Finally, as a comparison, interpreters do turn down assignments that are morally uncomfortable.

Janet writes:

BOB,

You raised an excellent point. I agree when in the role of an SSP, there has to be a dialogue between you and the DB person to come to agreement about the level of comfort in doing different things. I think it is important for all of us to realize that whether you are in the role of an SSP or an interpreter, you are not a machine, but a human being.

I am a firm supporter of dialogue so that the interpreter or SSP and the DB person discuss where their comfort zones are. I do not think it is right for an SSP or interpreter to impose their beliefs upon the deaf blind person as a way of controlling what the deaf blind person does or doesn't do. As I mentioned before, if the SSP or interpreter does not want to do a particular thing, that is their right. But it should end there, and the same for the DB person: they should not try to convince the SSP or interpreter to do something that just does not feel right for them, but to find someone who is willing. I think the moral beliefs of SSPs or interpreters is just as much their choice/right as anyone else's, and at the same time I don't think it is right to use one's own beliefs in that role, to tell a DB person what is right or wrong for them. This is like treating a deafblind person as a child. It only perpetuates an oppressive cycle that deafblind people are working to get out of. We need allies, not judgers/controllers.

In another situation, if an SSP or interpreter has become friends with the deafblind person and the boundaries have shifted to friendship, then of course whatever dialogue happens there is different. Say for example there is an SSP and a DB person and they are friends. The DB person wants to do something that just isn't okay for the SSP, then they will have a different kind of discussion about that because they are friends.

So, this is an interesting topic, and I think it's about freedom and responsibility. We are all responsible to ensure that the freedom allowed to all individuals is rightfully allowed to deafblind individuals as well.

Jeff writes:

I want to respond to Janie's comment on the SSP Division of AADB. It was formed, I believe, in the mid-80's before I became active in AADB. By the time I got on the board in 1989, the Division was falling apart. I do remember the tremendous difficulty in getting the SSP's together for such meetings during the AADB conventions - we never have enough SSPs, so heck, how could they be expected to meet to discuss issues, etc. I also think that some of the leaders were disputing with each other, etc.

In 1993, I went to the national RID convention, which happened to be in Indiana, my neighboring state. As many of you know, RID has many SIGs (Special Interest Groups), and they have one for the deaf-blind. Certainly, I attended that meeting, and I saw that they had a difficult time getting people to agree to be on the board. That was truly sad. I think RID could be a good place where the interpreters are free from working with DBP and have time to work together to develop some sorely needed guidelines.

The U.S. is so big, and so expensive to travel around... like a couple of years ago, Theresa Smith was gracious enough to have an SSP committee meeting in her home and invited many people - but it was hard to get them together, etc.

Maybe AADB can help drum up some ideas to help the SSPs unify.

Okay, enough of the above topic for now... although I did not read Randy P.'s original statement, I got a clear picture of what he wrote about from what other commented. This can happen again and again - it is not always easy to see the DBP have what they want but I am with Bo also, SSPs also have rights. I have noted at some AADB conventions when a DBP wants to go to an activity whereas his or her SSP is reluctant to go - often this can be worked out by switching SSPs with others. I know, sometimes we have no choice. I have had to speak up many times myself.

One good example, I was in St. Louis several years ago, and a group of us went down to the river. To do this, we were to descend a long, long staircase without railing. My SSP was most reluctant to guide me down - it took me 15 minutes to explain to her that with my cane and holding onto her elbow lightly, I could master this task. She finally yielded and admitted that it was not so bad after all!

I do resent some SSPs not telling me what the others are doing in fear of me demanding to be with them. Again I will use St. Louis as an example. When my SSP and her relief had guided me to the bottom of the steps, I naturally asked where the others were. The two of them were so hesitant but admitted that the others had gone further down to see a ship. I knew that it would mean walking down the hill on the grass. That super Donna Sauerburger who had taught me how to walk down steep hills came to mind, but I did not demand to go down because the others were already too far gone.

All in all, being with an SSP means GIVE and TAKE! It hurts me when the DBP takes advantage of the SSP and vice versa.

Kerry writes:

I was encouraged by reading Jeff B.'s examples to put in my comments here, risky as it is.

I remember one SSP (just to save typing the long words) telling me during one of our discussions: "You should hear what others are saying ABOUT you." For several heart-stopping seconds I was frozen. If I "should hear", then the SSP was really pointing out how disabled I was being deaf. I responded, finally, "OK, then, why are YOU not interpreting?" This time it was the SSP who froze in her tracks.

Another incident was similar. I was using an SSP on the telephone when someone entered, talked with the SSP while the SSP covered the telephone with her hand. Not even interpreting. What the SSP did NOT know was that particular telephone had a speaker/microphone system, which was active and the person on the other end heard everything. Later I got a TTY call with a full transcript of what happened. I did my damn best to pretend that I knew nothing, but it sure put an awful strain on the relationship. When I finally "broke" and revealed that I knew everything about the incident, the SSP exploded "Liar!"

There are many such incidents, some quite minor, but when they all add up, one begins to wonder...

Susie writes:

Sometimes an interpreter, sometimes an SSP would like to comment on the issue of SSPs making decisions, etc.

In terms of an SSP not wanting to go to a particular place (such as the topless bar), it would be simple enough for the SSP to turn down the outing when called by either the DBP or the SSP coordinator before the event occurs. It is an understanding (in the eastern neck of the woods) whatever the request is for an event or outing by the DBP that the SSP knows the situation beforehand and that the event will not change. Of course, with some flexibility on the SSP's part, s--t happens and something else may come up. Obviously, respect by both parties is the key issue in terms of sticking to the timelines agreed upon and the places, etc.

In the event that a friendship develops then I agree that the conversations surrounding going out and attending different events etc. will be very different. So I guess what I'm saying is that there shouldn't be such a discrepancy when in the middle of an outing if the SSP has been informed ahead of time and agreed to the situation. If at AADB or a similar event that last for a long period of time then the situation may be different requiring some shifting of the SSPs as new ideas and events will occur spontaneously and there ain't nothing nobody can do about that cuz s--t happens!

Sam writes:

Sam here... I agree with you 100 percent about being outspoken in an encouraging and yet blunt way. As people say, "The squeaky wheel gets the grease." If you don't speak out, nothing will happen to improve; everything will be the same. But if you speak out in a productive and negotiable and diplomatic way, you will get the oil or grease :)

Intervenor/SSP programs should always instill in the students' brains during their training so that they will understand: flexibility, geniuses, good communication, warm personality, confidentiality, etc. are required for being an excellent SSP/intervenor. Also SSPs/intervenors should get feedback from the consumers periodically in order to improve your relationship. I always ask for feedback. I want both strengths and areas to improve on.

Theresa writes:

Like Janie I am going to talk straight.

This topic has several threads.

Whose fault is "the limit"?

Who has power, who has control?

I think that the SSP did not say, "You cannot go there. I will stop you." I think the SSP was talking about her/himself, not about the DB person. It's not the SSP's fault you are blind. It is not the SSP's fault that the SSP can see. The SSP is being responsible for her/himself, not trying to control anyone.

SSPs at AADB volunteer for the convention, not for "everything". SSPs are not expected to go off campus except for "tours". SSPs volunteer for the convention and its official activities. Going out at night is not part of the official program of the AADB. SSPs volunteer and they should have an idea of what they are volunteering for. The AADB does not expect SSPs to go off campus.

SSPs are people who get tired. SSPs are off duty at ten PM. That means they are free to go to bed, to talk with their friends, to read a book, to go for a walk, or whatever they want to do with their time. After ten PM, SSPs are free. They are off duty. They will be back on duty the next morning. They will pay attention and follow your preferences all day.

Friendship does not come from guilt. Yes, I know some SSPs may want to go to a bar. Yes, I know that some SSPs and DB people are friends. Nevertheless, whey your (DB) friend says, "But I'm DB. I can't go by myself. You are the reason I cannot enjoy this convention like any normal person." That is very heavy guilt. It is very heavy pressure. It is not dialogue; it is blame and guilt.

Limits come from life, not from SSPs. It feels bad to DB people (and to SSPs) that there is a time limit that SSPs must be off at ten PM. There is a time limit because we do not have enough SSPs. SSPs are spread very thin. They interpret, guide, carry suitcases, push wheelchairs, carry trays, answer questions all day. They are on duty to be always alert from eight AM and earlier. SSPs are already working about 14 hours a day, day after day for the whole week. That is too much!

SSPs work long, long, long days. Then when DB people say, "But I want more. You are the reason I can't." How do you think the SSP feels?

Randy writes:

Theresa wrote:

It feels bad to DB people (and to SSPs) that there is a time limit that SSPs must be off at ten PM. There is a time limit because we do not have enough SSPs. SSPs are spread very thin. They interpret, guide, carry suitcases, push wheelchairs, carry trays, answer questions all day. They are on duty to be always alert from eight AM and earlier. SSPs are already working about 14 hours a day, day after day for the whole week. That is too much!

SSPs work long, long, long days. Then when DB people say, "But I want more. You are the reason I can't." How do you think the SSP feels?

Our lovely friend Theresa points out several SSP's views. I am in agreement with almost everything she said. The Deaf-Blind population can not expect the SSPs to work day and night, giving up top quality SSPing, at least I sure don't want that.

One point that Theresa mentioned was the time limit that has been established by the AADB SSP coordinator: usually the quitting time is 10 PM. No doubt the reason is to give the SSPs a break from their dedicated hard work. I certainly would want them to be fresh for the next day and able to enjoy themselves as well. Also she mentioned that the SSPs' only duty is the convention program and not outside activities, such as going to the bar off campus or other places of interest. True the SSPs should know what is expected of them when they volunteer their time. The SSPs should never feel guilty when they are tired and need a rest or break. The Deaf-Blind should respect that as well as they respect our needs too. Right, it is no one's fault that we are Deaf-Blind and want to do more. The SSPs need the time to rest. Yes, we all have limits. Life has given each one of us on this planet different limits and we all should honor that. Even our friendship depends on understanding and respect for each other. Still the Deaf-Blind are limited in their choices and even the AADB is encouraging it. I disagree that the SSP service should be limited to the campus and the convention activities only. I don't mean to blame anyone. I am just trying to find ways to solve the Deaf-Blind problem of limited choices. And I do believe there is an answer to it.

In my opinion, the root of the problem is not enough SSPs to go around in the convention. In my experience with the statewide convention and Camp Dogwood in NC, we also had a problem, at one time, recruiting SSPs for the Deaf Blind delegates or campers. The last three years, we really busted our tails trying to recruit new SSPs. The goal was to have two or more SSPs for each Deaf-Blind individual. We had 38 Deaf-Blind delegates and 89 SSPs for the convention in Wilmington. Some of the delegates didn't need a full-time SSP while others needed three. But the goal was to have enough SSPs to go around. The result? We had enough SSPs to go around and everyone was able to enjoy their stay, even way beyond 10 PM with no ill effects. Not all Deaf-Blind wanted to stay up late but it worked out for everyone.

How did we solve this problem? For a start, each visiting state should bring their own SSPs to the convention. That means the Deaf-Blind population must figure out a way to raise money for our volunteering SSPs, mainly transportation and lodging and not depend on AADB to provide everything for our SSPs. If we were able to have two shifts of SSPs, then the time limit problem would be resolved. It won't be easy as this involves the cooperation of everyone. This is only one idea as I am sure there are others who may have better ones. In North Carolina, we are working on a plan to charter a bus that will bring both SSP and Deaf-Blind to Conn. Wish us luck as this will take a lot of money. Like David Harrision said in his keynote address during the 1996 AADB convention: The Deaf-Blind can do it! How true!!! See you all around.

Theresa wrote:

Randy is right... not enough SSPs. Ironically, one of the reasons, it is hard to get enough SSPs is that they work too hard... because there are not enough SSPs. The more volunteers each of us recruits, the better. In my experience interpreter are much more likely to accept (to volunteer) if a DB person asks them, than if another interpreter asks them.

Randy is also right that money is an issue. It is hard for interpreters to take off work, miss pay, and also pay for the plane fare. It is hard for the AADB to afford room and board for hundreds of SSPs each convention, and it is hard for individual DB people to pay for the volunteers.

It is great that NC is working hard to solve this problem and it sounds very positive. Hopefully the areas closer to the convention can bring extra volunteers so that DB people who live far away will have more there to help them too.